for Val

[Guest guest]

Val:

I am so glad to hear that all is well. Rob had glucose in his urine in

January, but none since. His blood glucose levels have all been fine. Now

we are having problems with bloody urine. Saw a urologist today, and he

says the problem is with the kidneys. The nephrologist cant see him till

Sept, but the uro called today and now its to be 7/29. The waiting is

maddening. I asked the rheumy if it could be NSAIDS, and they didn't

think so, said to continue his Voltaren. He is also on Azulfidine, and

just started MTX about 2 weeks ago.

Anyway, glad to hear that Robbie is ok. He certainly has enough going on.

Take care of yourself, too, ok? Did you ever find out what is going on

with your wrists? Need to take care of yourself, too, mom!!

Love,

and Rob 14 JAS

On Tue, 24 Jun 2003 17:21:44 -0400 carneyval@... writes:

> Hi Dianne,

> I knew that they could cause it - but just put it out of my mind

> until those labs. I am beginning to wonder if there is anything

> that steriods doesn't effect? Just one more reason to get that dose

> of steriods down, if not gone altogether! Thanks for being there!

> Val

> Rob's Mom (5,systemic)

>

> In a message dated 6/23/2003 1:11:14 PM Eastern Standard Time,

> dbornscheu writes:

>

> > Val,

> >

> > I really hope it's not that!!! I didn't realize steroids could

> cause diabetes. Wouldn't that be the last thing poor Rob needs to

> deal with on top of everything else?! Let us know!

> >

> > Diane (, 4, pauci)

> >

[Guest guest]

Val-

I am SO HAPPY that the light is coming on for you! I can't imagine what a

relief it was to have the doctor be so thorough and spend so much time with you

both. I don't know which of the drugs coming up is going to be the one to do it

for Robbie.... but I certainly believe that his future looks good! And it is so

wonderful to be moving.... even if it is a wait for the MTX to kick in.... it's

moving forward and trying to find something!

I hope that the aches and fevers don't get crazy right now and good luck with

the first MTX dose. (You asked about folic acid doses and I'm sure you have had

many responses.... Caitlin takes the folinic acid - 25mg Leucovorin - 24 hrs

after the MTX and knock on wood, she never had any terrible side effects.)

I am sending positive energy and prayers your way for a healthy and happy

Thanksgiving.... and even more so that on Christmas morning, Robbie can get up

and out with no pain!

Best wishes to you both-

Colleen

carneyval@... wrote:

Hi guys -

I forgot about the filter - I'll have to make a post-it note to add to the many

around my computer! Robbie did great right after the post - I didn't talk

about this last night because I went on so much already. Over the weekend he

had some pain complaints (arms and legs) - though not bad and he turned down

Motrin. So, I thought we were out of the water. Last night he got up at 10:00

pm complaining of pain in his arms, legs, and wrists. I couldn't believe it! I

got him some Motrin, and when I was tucking him back in bed and gave him his

hug, I notice he felt warm. Checked and his temp was 101.1 - Certainly not as

bad as before - but I find it so hard to believe he is still having symptoms!

The pedi said they would put him in for IVIG if he was still having problems

after the pulses - but I am not sure how the new rheumy would react - and I

think that it is too soon to jump now. He sees the pedi for a follow up

tomorrow (more time away from work!) - but this morning, when

getting ready for his all day care at school (no school today, but the before

and after is functioning all day, since it is a work day for the staff (parent

teacher conferences - had mine yesterday - I'll brag to a sickening level about

that later!) Anyway, this morning, he had a limp - pain in his right leg - but

he turned down Motrin.

Well - gotta run again - talk to you later!

Val

Rob's Mom (7,systemic)